‘I think something’s wrong.’ He’s been here 7 years and I feel like we’ve just met. I struggle to get out of bed.’: Special needs mom advocates for mental health, ‘It’s okay to not be okay’

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“I was born in the summer of 1987 to a white single mother. I was the first mixed-race ‘person of color’ in our white family. My Nigerian father refused to acknowledge my existence and so my mum did her best on her own.

Courtesy of Charlotte Pearson

Despite the austerity and financial difficulties, scraping by on the benefits system, and living in one of London’s poorest housing estates, I have many happy fond memories of dancing around with my siblings to Billy Ocean and Michael Jackson, building forts, and playing Super Nintendo until our thumbs hurt. It wasn’t until I became an adult I looked back and realized we lived in poverty. The lights going out, no central heating in even the coldest of winters, and empty food cupboards were the norm in our home. But as my mum always says, my upbringing made me the strong and resilient person I am today.

Courtesy of Charlotte Pearson

To the outside world, I may come across happy and confident. The selfies, family photos, and occasional memes are the usual social media etiquette, right? But when I look back over the years, I realize hiding my problems and burying my head in the sand for so long maybe wasn’t always the best decision. On the rare occasion when I have tried to be open and honest about the struggles I face, I’ve been accused of ‘sharing too much,’ received criticism instead of being asked if I’m okay, whether I need any support, or shown any concern about the information I had just overshared. The priority was how I was perceived and not how or if I am coping. This is a big issue. Encouraging people to talk, mental health campaigns, special needs awareness, and posts about ‘being kind’ are just empty passing trends. For someone who lives it every day, I can tell you the stigma still remains.

Despite the not very supportive responses, I’ve had a lot more people reach out to thank me for being so open and honest. Many find comfort knowing they aren’t alone. They can relate because they are fighting similar battles.

I’ve found acknowledging and facing your problems head-on is so much better than hiding from or ignoring them. Some problems you just can’t hide from, especially problems that live in your head.

I want to share my story, my experiences with mental health, and my journey to becoming a special needs mum. I want to allow myself to be vulnerable in the hopes someone reading this will realize it’s okay to not be okay.

Courtesy of Charlotte Pearson

Now before I continue, I want to emphasize generally, I am a bubbly positive person and despite everything I’m about to share, we have a happy home filled laughter and joy. But that’s a side I’ve always openly shared. This is a different narrative about what you don’t see.

My name is Charlotte, I’m a 33-year-old mother of two born, raised and living in London.

My son Chayce is 7. He was diagnosed with Autism at age 2. My daughter Remii is 2 and she is currently waiting for her Autism diagnosis.

Courtesy of Charlotte Pearson

We live in a tiny one-bedroom, our walls covered in black toxic mold caused by the damp as a result of being overcrowded. Our home was deemed unsafe and unsuitable over 3 years ago. But still, we remain. We’ve just spent over 3 months shielding in isolation due to being medically vulnerable, confined to one room with no outdoor space with children whose development and health have been impacted by these conditions, in a country where people like me can’t afford to buy or rent privately. Still, we push on. I still start most days with big dreams, armed with a smile, forced optimism, and fading hope.

Courtesy of Charlotte Pearson

I’ve been unknowingly battling with ADHD my whole life, and depression and anxiety since my teens. For the last 3 years, I have been suffering from undiagnosed health issues that have me living in constant pain and referred to all the specialists with ongoing grueling tests and treatments that never give any answers.

I’ve rewritten this story over and over, struggling to decide how much I want to share, worried I’m coming across too negative and concerned I’m complaining too much. I am more concerned about how my problems will make others feel. Now, how insane is that? With all I go through, day in and day out, I’m trying to limit what I share and dull down my story for the sake of others. I shouldn’t feel like that. I’ll try my best to be transparent as I share my journey from the very beginning.

As I continue to look back at my childhood, I realize I blocked out a lot. For years, I only chose to focus on the good times. My fondest memories spent with my Nanny Marian. Weekends spent with her, grandad and my cousin, watching The Little Mermaid on repeat and ransacking her vanity with all her expensive creams, makeup, and fancy perfumes.

My favorite and earliest were our bus journeys when she took me to work with her. She would fire maths questions at me and beam with pride as I correctly answered them all, telling the other passengers I was ‘only 3! And so intelligent!’ Her positive energy lit up every room. She had a way of making you feel so special. Being with my Nan was my happy place. My escape.

Our home was crowded and chaotic with little to no attention to spare. At one point, there were 12 of us under one roof. There just wasn’t enough to go round. It wasn’t until I was an adult I finally saw things for what they were. That what we lived through was in fact poverty. Even though it wasn’t all doom and gloom, the reality is we had it rough.

Courtesy of Charlotte Pearson

As a young child, you barely even notice. As the years went by, I have constant reminders of how different my world was to my peers. Getting a first job aged 12 in order to buy school shoes is not a responsibility any child should have. But it’s something I just did, knowing the alternative would have been to go without.

I also remember braiding one of my classmate’s hair, in order to make some extra cash because I needed a new school jumper. As she so casually paid me from her pocket money, I sat and wondered about what that life was like. Pocket money, a nice home, and no worries. I don’t think she even knew how lucky she was.

Then there were the girls I thought were friends who laughed and gossiped behind my back as they looked down on me and how I was raised. One of them even got me a job in her dad’s shop. While he spoiled and doted on his daughter as a loving father should, I worked underpaid in their family business. See, I didn’t have a dad. So that $15 a day, minus the bus fair, wasn’t really worth giving up my Saturdays and the hour journey each way. But it eventually paid for those shoes I needed and the occasional treat until he decided he couldn’t afford my wage anymore.

This may have been entertainment to them as they sniggered about poor Charlotte, but it wasn’t funny for me. I was just 12 years old.

Courtesy of Charlotte Pearson

It was around that time, in my teens, I believe my battle with depression officially started. Truanting and ‘bunking off’ of school sounds like a rebellious teen who is out having fun when in reality, I was often hiding away in bed unable to face the world. Frustrated teachers told me daily how intelligent I was. They would lecture me about all I could achieve if only I would apply myself. They chose not to see the warning signs. Not only was I battling many demons mentally but I also had the frustrations of dealing with undiagnosed ADHD that meant I was unable to just ‘apply myself’ in a learning environment that had a one size fits all attitude and provided no extra support.

This eventually made my anxiety and depression worse and in turn, caused me to shut down completely.

I am however proud to say despite having the worst attendance in my year, rarely attending class, and not studying at all, not only was I placed in all the top set classes, but I also still managed to pass all of my exams. At this point, I was done with education. As my friends went off to college, I took a different path. Off I went handing out my CV looking for work. The following year, I moved out of the family home alone, just 17. Sofa surfing and sleeping rough until I was finally placed in a hostel. I finally got my own place when I was 23.

Courtesy of Charlotte Pearson

The 10 years after leaving school, I swapped and changed careers frequently. A random mix of job roles and careers that ranged from retail management to teaching in a college. I then finally went to college as an adult learner aged 24, got the grades I needed to get into my chosen university, and started a degree with dreams of becoming a school teacher. Then I found out I was pregnant with Chayce. I eventually dropped out and didn’t complete my degree.

Courtesy of Charlotte Pearson

As a first time mom, I was enthusiastic, had all these ideas and visions of our future. He would speak several languages, be talented in everything, a child genius who only ate organic healthy foods, and one day, he would be prime minister. I’d be this cool young mom attending all the mom and baby classes. We would go on all the adventures and everything would be perfect. Bless my heart. I was so naive.

Courtesy of Charlotte Pearson

In reality, I suffered from postnatal depression and struggled to get out of bed most days. We didn’t attend any classes. Just getting through the day took everything I had. This was also when we sadly lost my beautiful Nanny Marian and favorite Uncle Tony just weeks apart after they both had very short battles with cancer.

It took everything in me but I finally snapped out of it and with a new lease of life and fire in my belly, I decided to open a shop. I’ve always been a dreamer with big ideas! Before I knew it I was attending business courses with The Princes Trust as I wrote my business plan. In no time at all, I opened my own shop. I was so proud and excited. However, while all of this was happening, I also noticed my beautiful, happy little boy wasn’t developing as he should. Just over a year later, he was diagnosed with Autism. He was 2 years old.

Courtesy of Charlotte Pearson

This is something I mostly dealt with alone. I felt myself regressing right back to that familiar dark place. When you mix anxiety, depression, and ADHD, it’s a recipe for disaster. I had no diagnosis, no understanding of the turmoil in my head, and no support system. Before I knew it, everything came crashing down. I closed my shop and put all my energy into Chayce and his development.

5 years later, silly me went through those same excited feelings when pregnant with my daughter, Remii. In no time at all, my heart sank as I saw those all too familiar quirks and traits as the realization hit me. She’s on the spectrum too. At 2 years old she is now awaiting her diagnosis of autism.

Courtesy of Charlotte Pearson
Courtesy of Charlotte Pearson

It took a long time for me to acknowledge the depression and anxiety that cast a dark shadow over a lot of my life. And an even longer time to face the struggles I’ve always played down as just a ‘part of who I am,’ which was eventually revealed as ADHD. Then there’s the harsh reality both of my children have autism. If I’m honest, I don’t know how long or if I ever will truly come to terms with their condition. As much as I adore them, there will always be that feeling of injustice. I’ll still throw the occasional pity party and mourn for the children I expected to have. Don’t be mistaken, I wouldn’t change a thing about my kids. They are more than amazing! I helplessly watch their daily struggles. Things most people don’t even notice can overwhelm and sometimes cause them pain. There are things that attack all their senses. Sounds we dismiss as background noise upset them and car journeys make Chayce’s insides ‘hurt.’

Courtesy of Charlotte Pearson

A mother should be able to protect her children right? They look to me to make it all better, but I’m often powerless and it breaks my heart. Those are the things that make me resentful and have me asking, ‘Why me? Why my children?’ I’m finally able to talk to my son after years of thinking I would never hear his voice, but my excitement is clouded by the heartbreak as I watch his anxiety, frustration, and apprehension. The more aware he gets, the more affected he is by the people around him– from the kids who are mean to him because he’s a little different to the adults who don’t take his hidden diagnosis seriously and completely undermine everything he goes through.

This is terrible to admit, but I think back and sometimes miss how oblivious and unscathed he was. It wasn’t that long ago he was oblivious and unaware. Sometimes I describe him as finally being ‘awake and present’ because for a very long time he was this happy little boy who was vacant in a way. There was little to no interaction.

Courtesy of Charlotte Pearson

He’s been by my side for over 7 years and yet I feel like we’ve only just met. It’s been an extreme change of being non-verbal to becoming this curious little boy who I can talk to about almost anything. I just wish his amazing development didn’t present a whole new set of struggles he doesn’t deserve. It’s as if we can’t catch a break. We are making adjustments for the new him, while also trying to work around Remii and her needs, which are totally different than Chayce’s. Although their conditions carry the same name, what many people don’t always understand is autism is a spectrum. Chayce and Remii are total opposites with completely different needs and have varying levels of autism traits.

I always thought being a mum is the hardest job in the world. Then I became a special needs mum and it really opened my eyes. Having both my children with their different needs, often clashing and impacting each other, I’d be lying if I said it wasn’t tough. It’s my biggest challenge to date.

Courtesy of Charlotte Pearson

Many days, I hide my tears so I don’t upset anyone or make a fuss. We have enough to deal with without me adding to it. I grab an extra 5 minutes to silently cry in the shower or with my back to everyone as I wash the dishes at the kitchen sink, playing classic sing-along ballads, cooking, and baking to desperately try and lift my mood. I remember the first time I acknowledged my low mood. I was on my lunch break at work when I called my mom. ‘Hello, Mum. I think something is wrong. I don’t know what. But something is wrong.’ I had this feeling of confusion. I was happy? Wasn’t I? At least I thought I was.

I had a good job, loads of friends, a great social life, and I’d just moved into my own new home. Why was I so incredibly sad? This awful feeling consumed me and I couldn’t shake it. The worst thing about depression is it hits you from nowhere and is often without reason. This is something that many people don’t seem to understand. I’ve been given all sorts of advice from those who mean well but don’t understand, reminded of how happy I ‘should’ be. But that just adds guilt to the pile. It’s as if we seem unappreciative. But it’s so much deeper than that.

Courtesy of Charlotte Pearson

That conversation with my mom was over 10 years ago. I’d had these problems for years prior to that point, but that was the first time I really took notice of how I was feeling. But then, in classic Charlotte style, I just made a quick trip to the pharmacy for some St. John’s wort tablets and other vitamins. Obviously, I was just lacking in a vitamin. It made perfect sense. I dusted my shoulder off and just got on with things the best I could, not wanting to be a bother or allow myself to be vulnerable.

Sharing my feelings was not my thing at all. I was often referred to as an ‘ice queen.’ I silently dealt with my issues, never really facing them or speaking of them again for many more years. The problem was still very much there. I faced many dark days, weeks, and even months on end when it was really bad, like after the birth of Chayce.

Courtesy of Charlotte Pearson

It wasn’t until I fell pregnant with Remii I finally decided to seek help. I owed it to my children and myself to get some proper help. A year later, I was diagnosed with ADHD at the age of 32! I am now more self-aware and accepting of how my mind works and the additional struggles I face daily. I’ll always have the regret I didn’t speak up sooner. I think of the life I might have had if someone took the time to take notice back when I was struggling with school, or the million and one careers, projects, and failed businesses that may have been a success.

Courtesy of Charlotte Pearson

I have friends who laugh and say, ‘You don’t have ADHD, you’re fine.’ but they don’t see all I hide and mask. There are the friends I lost when I was at my worst because I didn’t even want to open my eyes, let alone face people. There were days when I sat in the dark with the curtains closed, phone on silent, not eating or sleeping or even turning on the TV. I guess I alienated myself without even being aware that it was happening. I locked myself away, confused, and sad.

I don’t share this for sympathy and I’m not feeling sorry for myself. I share this for awareness. I realize there are so many people out there who have been dealing with so much in silence. There are even more people who lack awareness and understanding when it comes to certain conditions that aren’t visible.

When you see my talkative, sociable, funny, and caring Chayce, take a moment to think about all the things we deal with behind closed doors and all that is inside his head you can’t see. Undermining his condition with comments like ‘he doesn’t seem autistic’ or ‘but he’s so well behaved’ ignores all we deal with and all our hard work.

Courtesy of Charlotte Pearson

If you have a friend who might seem a little off, has been absent, or just not themselves, their problem may not be with you but with themselves. They may need help they are unable to ask for.

For the past three years, I’ve been volunteering in my local community supporting other parents and carers of special needs and disabled children through my Charity As1, a support network of like-minded individuals who truly understand, founded and set up by me and another mom because we saw firsthand just how much it was needed but not provided.

Most recently, I have set up a personal page on Instagram where I share our family journey, parenting tips from my own experiences, and mostly just trying to be open and honest about the good and the bad. After many requests, I have decided to start a YouTube channel and a blog that will both have the same theme: an honest, open, and sometimes ugly insight into my experiences being a special needs mom, mental health, and lots of tips, information sharing, advice, and support.”

Courtesy of Charlotte Pearson

This story was submitted to Love What Matters by Charlotte Pearson. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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